It was the end of October 2011 when I got sick. Over six years ago now. I was working as an au pair, or nanny, in Auckland and suddenly couldn’t get out of bed.

It was hard to see a cause at the time. I suppose it had been a stressful year, though I still think of that year as one of the best of my life. That was the year I met my husband and my best friend, and got to have a small part in raising two beautiful little girls. But, a family friend passed away in October. And I was a victim of cyber-bullying right at that time. Plus, my host mom was travelling a lot so I had more responsibility during that time. Maybe each of these played a role. Maybe it was a change in diet. I’m not really sure.

Mark and I had just started dating a couple weeks earlier. It was him who took me to all of the doctors, to the emergency room once, and to get blood work.

The first doctor urged me to take a week off of work (but really, I had no choice). She told me to stay somewhere else, if possible, so that I wouldn’t feel guilty around the house.

Confession: I still feel guilty about having to leave that family. I was never able to go back to work, and I know that was hard on them. When I came back after that week away, I could not get out of bed. I could hardly speak. Mark had to tell them that I couldn’t work anymore and I could hear them from my bed where I lay, immobile and helpless.

After I left there, I stayed in a small spare room in a house with some others my age. Mark had to bring me food, sometimes helping me to eat it. He even had to walk me to the bathroom at time – which is not how one wants to start a relationship.

I wanted so badly to just get better. But weeks turned into months, and I had just managed to get on a plane back to the States at Christmas.

Those with a sudden onset of chronic illness will understand the frustration of going from doctor to doctor with no diagnosis. Even if I tried to count all the doctors and specialists we went to, I couldn’t. I remember one doctor telling me that maybe I wasn’t breathing properly.

They first ruled out diabetes, thyroid, cancer, heart problems, etc. It was a couple months of just ruling out everything and spending a lot of money doing so. We drove four hours to a really nice hospital where they did several other tests, and still had no real answer. My gastroenterologist found pre-ulcers and gastritis and that was as far as we got.

No one wanted to diagnose me with CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis). The doctors didn’t seem to believe in it.

That made me feel worse because they didn’t believe that my symptoms were real. The people around me struggled to understand, and guilt chewed me up inside – even though none of this was my fault.

I do want to say that there were sympathetic doctors (and acquaintances) along the way – and I know they really, really wanted to help me. They just didn’t really know how. And I still think of them fondly. Caring people always make a difference – whether or not it’s the kind you’re looking for at the time.

My parents did a lot of research and we found Jacob Teitelbaum’s work on CFS/ME in From Fatigued to Fantastic! I’m sure that what we did from his suggestions helped a little. I could help out with children’s programs at church most weeks.

It wasn’t until mid-2013 that we found a doctor near us who would really help us. He was an M.D. who had gone back and gotten a D.O. (Doctor of Osteopathic Medicine).

We brought our list, our script, and presented it to him, and I remember my mom and I crying with relief when he said, “I can help you.”

When you give someone hope, you give them power.

They did more tests – some that other doctors didn’t do because of the holistic nature of them – and found adrenal fatigue (which I had been tested for and not diagnosed) and bacteria that they believed I had from a trip to India and Nepal in 2007. They gave me a book called Adrenal Fatigue: The 21st Century Stress Syndrome by Dr. James L. Wilson. And I turned a corner.

After cutting out sugar, caffeine, dairy, and gluten, we added a probiotics, a powerful set of pills for

Our church was doing a Vacation Bible School that week and I did the class that I’ve done since I was 13 – and I realized that, hey, I enjoyed teaching.

I was feeling better and my doctor was really optimistic so I signed up to teach high school English in a small town close to home.

Those two years of teaching were phenomenal! Oh, how I loved it! I loved waking up and being able to get out of bed. Every day was a gift. There were still some bad days, but I always managed to recover. During this time, I did chelation therapy and continued to see my doctor. Though I used all of my sick days, I felt that my life could be full again. I was making a difference and I was happy.

Mark proposed (we had been doing long-distance for four years) and we planned a wedding in three months. We got married in November 2015 and came back to New Zealand after New Year’s.

I didn’t do so well after that. We had planned on me working, but I was sick all the time. We were happy, but my health took a turn for the worse.

We did some doctors again and tried different things – and the same things as before – but I was losing hope. I blogged to help me through the hard times (through a loneliness series, some lies we tell ourselves, and No-Sugar September posts). But after a few months, the brain fog and body fatigue were too much. I was in pain half the time and we just coasted until a couple of months ago.

During this time, my depression got worse. I felt suicidal at times. This is something that is important to realize about invisible illness: It is hard for us to stay hopeful. My husband helped me so much during this time. It could not have been easy for him to see me at my worst.

We had heard about this program called The Lightning Process for years, but hadn’t done it. We knew a couple of people that had been through the training by this time, so that helped us finally sign up.

I’m writing this post now without any brain fog. I’m not in pain. I’m not tired.

I am HAPPY and I am HEALTHY.

Just in the past week, I have done three huge walks and several shorter ones.

Two months ago, I would have struggled to do half of a short walk. And then I would probably have been in bed for a couple of days recovering.

I’m cooking and cleaning and showering whenever I want now! This sounds basic, but some days I had to choose between taking a shower or talking to a friend because both were exhausting. And there are people that are way worse off than I was.

I’d love for you to read about how I’m living a full life now. Tune in later this week to read about it! I hope it can help someone out there who feels hopeless, as I once did.

We’re at the end of our “The Power of Pause” series. I hope that you, like me, have learned a lot by stopping in the middle of chaos. Let’s end by realizing something very important: Much of what happens in life is actually out of our control. It’s out of our hands.

There’s a song that I used to listen to over and over by Shaun Groves, back in the day where contemporary Christian music was all we had. It’s called “Out of my Hands” and the chorus goes like this:

“Out of My Hands” by Shaun Groves

CHORUS

It’s out of my hands

It’s out of my reach

It’s over my head

And it’s out of my league

There’s too many things

that I don’t understand

So it’s into your will

And it’s out of my hands

I know that I am not the only one in the universe who feels like there is no controlling my own life. Sometimes the things we should be able to tweak, improve, or even change completely just seem “out of my reach”. I lay in bed sometimes and I reason and I make plans. And then I remember that one thing that prevents me from going after even the mildest of my wildest dreams. It’s frustrating, isn’t it? Even if your “preventer” isn’t chronic illness, there’s normally something that stops you.

Right now, I’m relating to Job a lot (I mean, we all relate to Job at some time in our lives. Am I right or am I right?). Not the part where he loses everything he loves. The part where after a certain amount of time and a certain amount of friends judge him, he begins to question God’s goodness.

Optimism is a beautiful thing, and it’s one thing that I am just really good at most of the time. I can turn any bad situation around. I know all the tricks – like by telling myself that everything happens for a reason, or that I can use this situation to help someone else out later, or that this time of suffering will bring me nearer to God or to the people around me.

Job must have thought all of these. He must have known all the tricks. I mean, his friends were really quick to point them out to him. And I understand his friends because they say all of the negative things that I say to myself when optimism fails and my serotonin levels dip – that I deserve what I’m getting, that God is punishing me, that I must have done something really wrong.

But Job got tired of it all, like we all do when people give us advice without really knowing what’s going on inside of us. He’d been good through all his friends’ tirades, but he just melts down. And then Elihu pipes up against Job and the others. Then God speaks.

Job thought that he had rights. That what he wanted was somehow greater than what God had in mind for him.

Of course he does this! He is human. As a fellow human, I completely understand.

Questioning God is something that I’m sure every human has done at some point in their lives – though they may call God the universe, or chance, or Mother Nature. If there is something higher up there, then we feel the need to blame it.

But questioning God has always been foreign to me.

Now that I’m on the brink of my 30th birthday and I have been sick for the larger part of seven years now, I’m starting to get it. I’m run down. I LOVED that verse that said that God knew the plans he had for me – plans to give me a hope and a future. All I ever wanted to do was serve God and help people. I have insane amounts of ideas and dreams and visions in my head that don’t stop even with chronic fatigue. I have ideas that I truly believe come from God. And I run with them. I run with them until I remember that I can’t do any of it. Not on my own. Not with chronic illness.

I’m in bed every single day. I wrote a book where I proclaimed that I would not waste my life. What am I doing? Well, I feel like I am wasting my life.

So I cry out to God. I yell at him and tell him that this is not what I wanted for my life. I tell him that I don’t want to be sick anymore. I tell him that I want to build that orphanage in Romania. I want to open up a place where women can come and be together and help each other. I want to help stop human trafficking in Cambodia.

Thus, I ask the age-old question: Why do good things happen to people who want to do good?

For what have you been angry at God? How have you questioned his goodness?

“But the Lord answered Job out of the whirlwind and said: ‘Who is this that darkens counsel by words without knowledge? Dress for action like a man; I will question you, and you make it known to me. Where were you when I laid the foundation of the earth? Tell me if you have understanding…. Shall a faultfinder contend with the Almighty? He who argues with God, let him answer it.” (Job 38:1-4; 40:1)

Does God’s response to Job answer my questions? Not really.

But it does remind me who holds the world in his hands. It reminds me who is in control and that it is not me. God reminds me that he created me and everything beautiful and grandiose around me. He shows me that I actually know nothing. He reminds me that the birds in the air and the fish in the sea praise him. They don’t blame him for anything.

So if all that He wants me to do with my life is praise him from my bed, then that’s what I need to do.

At the end of our series on pausing, let’s stop and remember this: It’s all out of our hands. And that, my friend, is okay. We don’t need answers all the time. We just need to remember who does. The one who holds the whole world in his hands.

I have so many big plans, and I’ve always been very conscious of making my life a good story. I’m “closing in on 30”, as my dad puts it. But, I have a countless number of goals. My head is always spinning with ideas – a centrifuge with no output.

When I grow up, I want to make a difference.

I want to be an adventurer.

I want to be an artist.

I want to be an author.

Six years ago, I could act on my dreams – on the plans that God had for me then. I’ve travelled. I wrote a little book. But now, everything is a blur because I have an invisible illness. My mind is a cloud, and I’m endlessly searching through that cloud for some release from brain fog so that I can get on with my life. I wake up each morning wanting to be normal again. Some days when I feel better, I find hope. I feel like I might be normal again. So I start dreaming.

I dream of being healthy enough to go hiking whenever my husband wants.

I dream a lot of things. And some aspects of what I dream get done. But, I need more help than I can say to do them. I need encouragement. I need grace from friends, family, and church members. And I feel ineffably thankful when I receive any affirmation at all. It keeps me going.

Someone needs to write this. I wish someone had written it for me. I wish someone had written it for the people I love to help them understand. I wish they had written about chronic invisible illness years ago. Maybe they did and I just couldn’t find it.

Today, I am suffering. So, it seems like a good day to write some confessions. I, like hundreds of thousands of people in the world, live with chronic invisible illnesses. I’m talking chronic fatigue syndrome (myalgic encephalomyelitis), adrenal fatigue, fibromyalgia, depression, anxiety, food sensitivities, irritable bowel syndrome, and recurring gastritis and UTIs, and many other illnesses that no one sees when they look at you. It’s not pretty to talk about. It’s not comfortable to talk about. It’s not nice to write that I am sick.

For others, it may be different chronic illnesses, things that people on the outside may not be able to see – arthritis, anemia, chronic headaches, or even cancer. These invisible illnesses affect your life like it affects mine.

I get sick a lot, and it’s not easy to always be sick, or to always wonder if I will feel well from one day to the next. Those that don’t know me well probably find it hard to figure out why I’m not always at church events or having to cancel coffee dates. Those that do know me best often get upset that I play it off in front of others. I don’t let on how hard it is. When someone asks me what I did last week, I try and brush it off and say, “Oh, I just sat around like a bum.” I want them to know that I don’t want to be like a bum. The verb “do” is a tricky one, and it’s hard to say what I “do” because everything I want or need to do, I do one day at a time.

More and more of us westernized, stress-driven men and women are being faced with a new sort of illness. It comes in many different and unique forms. It is general and consistent ill health. And it is often invisible.

When I first came to New Zealand (on January 1 of 2011), I was fairly healthy. I lived with a family and looked after two beautiful little girls as their au pair. A few months in, I started having these insane gastrointestinal pains and feelings of severe weakness and dizziness. After the stress of an unexpected conflict, I became almost immobile. By November, I was no longer able to work or drive. I could not function. There was a nice family, and then a house full of people my age who let me stay with them until I had strength enough to fly home to Texas.

After months going from doctor to doctor (from general practitioners to neurologists to gynecologists to gastroenterologists and many in between), they found a few things, but never anything that made me feel better.

I stopped eating sugar, dairy, and gluten for a time and got well enough to teach English for two years. But, I’m back in bed now at least 2 to 3 days each week. I want to be honest about what it’s like to live with chronic ill health because it’s hard for most of us to be honest about.

I hope that, in reading all of this – and these confessions that I give you – you can either find strength in relating to someone else like you, or that you can find mercy and understanding for those who suffer.

So, what is it like to live with chronic health problems? I give you my confessions.

11 CONFESSIONS OF LIVING WITH CHRONIC INVISIBLE ILLNESS

1) I always feel guilty.

The “invisible ills” always feel like we’re letting people down. Lately, I feel guilty for not being able to cook or to do the laundry. Mark has enough to do without taking care of me. I’m truly lucky that he doesn’t mind. But, when I was first sick, the guilt that I had from not being able to look after those two beautiful girls that I was nannying was unbearable. I still feel that guilt. Realizing that it’s out of my hands is hard. The same goes for having to say “no” when I want to do things with friends or family. The guilt comes, and it never seems to go away.

We feel like outcasts because we just can’t “do” everything that others can do. If I go out for one fun day, it wears on me, and I spend the next day (or two or three) recovering. Those days recovering are lonely days – days that we want to be with people. But they are also days that we don’t want others to see us. We want people to understand, but most people don’t. This makes us even more lonely.

3) My chronic illness means I often have anxiety and depression.

My depression and anxiety came with chronic fatigue syndrome. Many times, they go hand-in-hand. When we can’t live normal lives, it’s hard to cope in other ways. I can be soooo happy one day, and sooo low the next.

4) I am almost always in pain.

Whether it’s depression or anxiety, CFS or fibromyalgia, there is pain. There is emotional pain, and there is physical pain. Both are invisible. I am in pain most of the time. Some days I am okay, and on those days, I am so very thankful. But if we seem grumpy or irritable one day, it might just be that we’re hiding something.

5) Every healthy day is a gift.

My students used to ask me why I was so happy. Part of the reason was simply that I could get out of bed in the mornings and come to work. When I wake up and feel like a normal human being, there is just this immense thankfulness inside of me. Health can easily be taken for granted.

6) I don’t always look sick.

It may sound obvious as a confession of “invisible” illness, but I want to confess it here. Sometimes when we tell people that we are sick a lot, they look at us puzzled. Sometimes they even say, “But you don’t look sick.” That is true. We don’t look sick. But we feel sick. Even bloodwork doesn’t always show that we are sick. They don’t know what causes chronic fatigue syndrome or fibromyalgia. But it is real. Sometimes I wish people could see how I felt. But, they can’t.

7) It’s sometimes impossible to get out of bed.

Have you ever had the flu? A high fever? That’s how I feel when I am sick. I tried to get out of bed today – and even drove to where Mark was working. This invisible illness hit me, and he had to leave his car there and drive me home. Yesterday, I was probably out of bed for maybe an hour (and that includes going to the bathroom throughout the day). I have had days when I’ve had to be led to the bathroom. I have had days when Mark had to spoon feed me himself. When these days happen, none of us enjoys them. We want to get out of bed. We want to be normal. But, it just doesn’t happen.

8) I am afraid. To work, to make plans, to have a life.

Fear can easily control the lives of those with invisible illnesses. For the person with anxiety, they can feel completely debilitated in a crowd. They can be afraid to go out for fear of having a panic attack. It’s hard to explain to people that I am afraid to work right now. It’s a difficult confession to make. What if I can’t do it? What if I get sick and let people down? These invisible illnesses often put our life on hold. It’s just not fair.

9) Exercise doesn’t always make me feel better.

Just today, I was reading that a primary symptom of chronic fatigue syndrome is flu-like symptoms following over-exertion. When I do too much, I am bedridden. The key is to exercise slowly. Very slowly. If we go out for a run to help ourselves feel better, as is often suggested by friends and family, we can put ourselves back for a few days.

10) Not all doctors understand.

I went to two doctors in New Zealand before coming home, not including a trip to the Emergency Room. One of them told me I just wasn’t breathing correctly. In Texas, I went to at least seven different doctors. I left half of those crying because there was nothing done to help me. My mom and dad (whoever went with me that day) and I would tell them everything, and after a couple minutes, they would start fidgeting. Many people with “invisible” illnesses sometimes feel that we’re wasting a doctor’s time with all of our problems. To this day, I feel guilty when I sit with a doctor. I know that they are busy, and I feel bad. Of course they can’t fix my problem in ten minutes. This means I have a hard time telling them everything I need to tell them.

11) I feel useless. Almost daily.

Another difficult confession to make. When I feel most sick, I have an almost continuous feeling of uselessness. I feel like I can’t do anything – can’t do anything right – can’t do simple tasks – can’t feed myself – can’t take my medicine – can’t remember to message or text someone back. Without the ability to work or cook or clean or, sometimes, to type, what is there to be useful at?

Those are my confessions – and, I believe – the confessions of many that suffer from illnesses that no one can see. Our conditions, diseases, and illnesses may be invisible. But we are not. Show someone compassion this week. You do not know what is underneath their skin.